Does anyone use a massage machine? I just bought a lym... - LSN
Does anyone use a massage machine? I just bought a lympha press as I was so disheartened by the lack of massage on the N.H.S ( 2 - 3 mths)
Id like to know about these as well please thank u xxx
Thanks for posting this. I am also seriously thinking about something like this. It would be very useful to know more about it from you. Firstly, how expensive was it? Were you able to test drive it first? I also have secondary le in my legs and it is spreading up into the torso so it is almost impossible to bend . . . can not touch my feet properly now which makes donning the compression garments extremely difficult. I have had very little help with MLD and only get to see the therapist once a year for measurements.
Please post more about your experiences with the machine.
Thanks
Christo
I am having massage 1 - 2 times a week on the lympha press at my lymphoedema clinic. Just started this last week but they say it takes a good few sessions until you see the full effects. My leg is very hard at the moment and they said that this should help soften it up! Had a 25 mins session and it's very relaxing. Highly recommend it! My lymphoedema is in my leg and the nurse did say that it might push the fluid into my pelvis and if this happened then we would need to try something else. Make sure your clinic knows what you are doing and ask for their advice for how often and how long to use it etc. Sounds like a great plan to me.
I purchased a cyclo massage machine about 6 months ago. Expensive and large. Is it effective? Difficult to tell because my swollen leg is only 8% fatter than the other one and I don't have a good set of before and after measures. It is however very relaxing and I use it every day. I have used a machine like the lympha press in the past. That was pretty basic and just applied variable compression to my leg, repeating a cycle every 2-3 minutes. While it feels like it should be doing something, forcing the lymph out, if the lymph vessels are blocked where is the lymph going to go? MLD, simulating the lymph nodes, is probably more effective than crushing the leg. My two pence worth.
I also purchased a cyclo massage mat in the early days of my diagnosis and whilst it was pleasant to use i am not sure it was effective in any way. NNE
lympha-press.com/how-lympha...
On this site you can see all about the machine and how it works. I have both arms affected and was warned that the fluids may move to my shoulders and maybe even my chest. Here in England for some reason therapists are very against the machine. However in Europe and America therapists are very for these machines. The therapist said to me the flid you have in your arms can be compared to fluid in your basement wheras if the fluid does move to your shoulders it will be like fluid on the balcony and much easier to deal with.
It is very frustrating to have to even consider the machine - many medical insurance policies in the USA supply the machine to their affected patients.
I donot see any visual improvement as yet but I have only be using the machine for a few weeks. I was and still am desperate to do what I can to help myself manage my condition. I do feel very frustrated that the medical proffession knows so little. I paid £2,500 inc. shipping as I bought it abroad. Here in England it costs £3,500.
There are other machines on the market. My friend got a machine from her therapist who was doing a clinical trial. (Mount Vernon Hospital London) She had it for 2 months. Her arm swelling went down and her therapist has asked her doctor to PRESCRIBE her one! We are waiting to see what happens.
Hi
I have a Flowtron Plus inflatable thigh length boot made by Huntleigh Healthcare. I have used it periodically for some 15 years. It was suggested to me by physiotherapists when I first started getting help. The local NHS physio first mentioned it. They had the boot part but no inflatable boot. Only offered 15 minute MLD sessions - takes 30 mins per leg - so went private.
Private physios both work in NHS as well as own practice and suggested Boot as cheaper alternative to weekly massage.They got me the Flowtron cost then £200.
At first used it twice weekly gradually reducing to once a week. Now about once a fortnight for 20 minutes each leg.
Huntleigh Healthcare still in business and showing Flowtron products on their website huntleigh-healthcare.co.uk but I don't see the boot I recognise. Take a look at their dvt prevention products. Cleo Active do a boot similar to mine see club-cleo.com and I found another called C- Boot Classic at benecaredirect.com - cost £510.
I find mine helps and lacking almost any outside help recommend you look closely at getting one. Mine consists of an electric pump and an inflatable boot which pressurises and deflates.
I havent seen a UK machine other than for lower limb treatment.
Hope this is of use.
Hi Again
Just found another outfit which might be of use.
Sissel UK, at Hebden Bridge, West Yorks. website sisseluk.com.
They show a 'Press4' pump and sleeves supplied with sleeves for both arm and leg use. Price £430.
Hi all, we supply the lympha press in the UK - if you want to try it please let me know. naomi@compressiontherapyuk.com. The US website will give lots of clinical papers and the manufacturer website megoafek.com also has clinical papers. i took on the distribution i the UK and Ireland because the lympha press is fantastic; i have bilateral lymphoedema and can speak personally about how effective it is. there are of course other pneumatic compression therapy devices on the market; but none that work in this way with sequential compression and 24 chambers in the full trousers. best, NNE
These machines have their place, but people investing (some considerable amounts of money in some instances!) need to be aware of how to use them effectively. I gained two clients, both lads with secondary leg lymphoedema, who had seen the Flowtron device on ebay, read that they helped get rid of lymphoedema so invested. Neither of them know each other, and it was pure coincidence they live in the same area.
One of them received his device, neglected to read the instructions, plugged it in and used it for about an hour - saw no difference and never used it again!
The second received his, also neglected to read the instructions, applied it to his leg at bedtime and fell asleep wearing it. He did this a few nights in a row, and then one morning woke with a skinny leg but dreadful genital oedema.
PLEASE read the instructions if you are not being taught how to use it by qualified practitioners. You really must do SLD to your abdomen either before or after use, and spend some time on the hip/buttocks (if you can reach!) to encourage the fluid to move into a functioning area.
Hi Lynora
I have just read your post - sorry it was made a year ago!
I notice that you mention the importance of doing SLD to the abdomen before and?or after using a lympapress machine. i am considering purchasing one although the price makes one nervous about making a mistake. I have got LE in both legs and it is spreading upwards into my torso - starting to feel like the Michelin man which is no joke!
Could you be kind enough to explain the SLD abdomen method so I can make sure I am doing things correctly.
Thanks for your kind help.
Regards
Chris
Hello there... I'm not sure whether or not this would be useful.
Quite a few years ago I discovered the Zen Chi machine. I can't categorically say but I honestly do feel that this machine has helped me immensely.
I remember my consultants saying that my 'elephantiasis' type legs was fibrous tissue and needed to be broken down by ultrasound.. It was a single session that I had in my friend's house that pushed my legs over a summit that had enabled me to exercise and reduce my oedema and bring my legs back to 'normal'
Shameless plug - you can read about it here:
Really good advice from Lynora.
I personally am super naughty, I actually got just a standard massage machine (for £15 from the charity shop ha ha) and I use this carefully by making sure I am only achieving the right amount of pressure against it.
It's hugely vital to be gentle, slow and careful over time to use anything like that. Even being super careful there are times when I have had to say to my bloke, help me out with my neck SLD it's getting blocked up there (I joke and say my bum is round my ears lol). He will only let me do a certain small amount for a few days then I take a break as you have to give it time to actually get out of the system not overload it.
I can't get free MLD and I personally can rarely afford it so I don't feel I would be able to cope without tackling some of these things myself. But even with this slow and steady approach, at first the fluid gradually moved out of my lower legs. That seemed great. But then it started to pool in my abdomen, which was so heavy! Like being pregnant, and at one point even keeping food down and breathing felt all a bit laboured because of the pressure, I ended up getting a CT scan privately which did show it was just surface lymph, just lots of it. Finally that is now going and I'm breaking it up. But thats years of trial, and some error! And that's overlooking that getting a bit of a blocked groin is WAY less concerning for a woman I'm prepared to bet!
Massage machines are a funny thing therefore, high risk, potential high reward.... So I would never recommend them to others but I would never do without it. I think everyone needs to make their own decision, but always be slow, gentle, take breaks of weeks at a time, and if you're not happy about something pay to see a professional MLD practitioner to clear you.
Of course the correct answer would be you should get MLD from the NHS then none of us would have to take desperate self help experimentation measures in the first place, but there we go! One day 
Can we ask LSN and BLS to combine forces and lobby Health Ministers across the UK legislatures to improve lymhoedema services including provision of MLD?
There is work currently going on in Scotland at quite a high level to develop a Framework document based on the Welsh version that would improve the equity of service delivery but not sure if MLD is covered. Can any lymphies based in Wales comment on this?
Here I. North East Wales lymphedema care sucks. During the past 10 years I have not been offered multi layering bandaging, duplo test or mld. I was offered a lot of abuse by my practitioner who discharged me back to my gp. I have lost a lot of weight and my garments were too big. I spent the last four years trying to be remeasured. Discharged from the clinic many years ago, the practice nurse is not qualified to measure and prescribe my garments, I have been left with poorly fitting lightweight stockings that slide from knee to calf and do not stop my limbs from swelling. Whereas my old prescription was too big, now would be too small. I experience a lot of discomfort and night cramps. I am my husband's carer since he had a heart attack and suffers from COPD. Its even harder to get the care I need due to COVID but that is just an excuse since this has been going on for years. I am very interested the debate on compression boots which are unavailable on the nhs here so would have to buy my own as there are no private mld practitioners within travelling distance.
Oh dear Tigerpatch! I was under the impression that the Wales Framework was supposed to reduce this sort of response and also reduce regional inequality. There used to be a good wee video about the improved services but it doesn't sound as if they are reaching your neck of the woods. But it might be worth a Google search for Wales Lymphoedema Framework and see if has anything in that you could use to push for improvements.
Please note that if you have high blood pressure you need to make sure with your doctor that using the machine is advisable.
I had high blood pressure which was disappeared by large weight loss. My lymphedema has also improved. I can now happily use the machine which also helps. Good Luck to you all.
Hi all, I'd like to share with you my experience with the lymphapress with you.(magoafek.com) it' is a wonderful thing to have and it makes your life so much easier, you can cope better, you feel in control of your condition and not dependent on MLD, therapists etc. It is very easy to use, pleasant and effective, it keeps your skin and tissue soft avoiding the building up of extra fluid and consequent fibrosis. i strongly recomend it, it's not cheap but it's worth investing on it. I strongly advise not to use the old machines such as flowtron as they come in boots and they don't clear the torso with the possibility of pushing the liquid in your groin etc. the lymphapress is a very sophisticated machine and it works all the way up your body in order to reach the main lymphatic around your neck which is where it needs to end
Hi Panzanella,
I am pleased to read that you have a good experience with your lymphapress. I am also considering buying one, but the price will be around 4000 british pounds - the machine and the lympho pants. So I want to be sure it will be fit for purpose. I have LE in both legs and rising up into my torso - starting to look like the Michelin man - no jokes really. Did you purchase yours in the UK? And is there good backup service from the supplier?
Would you be kind enough to contact my email & let me have full details/?
cgbessell@gmail.com
Best wishes
Chris
I'm having great difficulty finding ANY website that incorporates the name/word magoafek. I've even copied and pasted the address you wrote, into my address-bar, all to no avail. I'd love to read about this lymphapress gadget but it doesn't look as though I'm going too. I'm really disappointed.
Can I ask you if this lymphapress machine is any good with Arm lymphoedema or is it specifically for leg and body lymphoedema?
it is so interesting reading about the various experiences with pneumatic compression. For me personally, one of the the USP's about the Lympha-Press is that you wear the garment right up to the midriff - so the whole of the trunk of the body is treated too and there is not flooding in that area. When using any type of pneumatic compression it is ESSENTIAL (sorry to shout!!) to do some simple clearing first. It is also important to use the correct level of pressure - not too high; we know the lymphatics are quite shallow below the skin so too high a pressure is simply squeezing them and exacerbating the problem. NNE
I use lympapress. They let you
have a trial and there is no
hard sell. The machine does the
work of clearing thru a structured
Massage sequence. They are used in many countries and in USA prescribed as part of Medicare. It's totally wrong they
are not on NHS here or not more
widely used by therapists in centres who could then help 10 people in the time it takes to help
one. On a measured comparison
our LD press achieved more
than MLD in one session.
BUT it's a case of learning how
best to use it - position, rhythm etc. therapists are quite ignorant
of them in the UK - infact they
would help a therapist to help more of us, not do them out of
a job!
Hi I'm using hydrogen flowtron from huntleight helarhcare I tried it for 6weeks first
What's the best
Lympha press is useful, my wife uses it half an hour everyday after work. It is not expensive in China.
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